Uncertainty and order

People generally don’t like uncertainty. Weather forecasts, hurricane warnings and geological models exist because of uncertainty. People eat at McDonalds. Horoscopes endure.   Gamblers have a love-hate relationship with uncertainty. The insurance industry exists to lessen the financial penalties of uncertainty. Mathematical models are developed to try to take uncertainty into account. We all want to have some idea of what is going to happen. It is about control. I’m writing a post in my other blog about the mathematical and personal aspects of uncertainty.

Jonathan on his way to sports day at Mairehau High School.

One of the more obvious aspects of Autistic Spectrum Disorder is the need for order. Jonathan has always liked things to happen when they are supposed to happen, for as long as they are supposed to happen, and with plenty of warning. For a blind child, needing order serves some very important functions. Fortunately (and possibly this is no coincidence), we have had a fairly ordered and predictable lifestyle as a family. He would eat his breakfast at the same time everyday and have a bath on certain days. I think part of his love for television is that everything happens when it is supposed to, and for exactly the correct amount of time. Jonathan preferred secondary school, with set times for certain subjects, to the more freeflow approach of primary school where he never knew when this particular activity he was enduring would end, and another begin. Jonathan ate the same food every day for about eight years, and it really isn’t a lot different now. One of my great achievements in life was getting him to be able to eat at McDonalds without taking a lunchbox. (More on that in a later post)

The other day in church one of the speakers was going over time. Jonathan leaned over and asked me, “Doesn’t he have a watch?” There was a clock in plain view, but the speaker was oblivious. When Jonathan was asked to speak for seven minutes, he wrote and practised his talk so that it was seven minutes. We needed a musical piece about three minutes long. Jonathan produced an arrangement exactly three minutes long (instantaneously). When Jonathan is in the class, it does not go over time without comment. Jonathan knows exactly when things should happen, such as the days the rubbish bins go out, when Mark has meetings, and if the washing needs to be brought in. It used to be that if he didn’t hear the noise of dinner being made at 5pm he would come out and ask me, “Shouldn’t you be in the kitchen?”. I chose to see it as endearing, rather than annoying.

I’ve tried to imagine what life was like for Jonathan as a baby and young child. Everything happened suddenly for him. Because he was blind, he didn’t see people arriving and leaving, but rather they were “here” or “not here”. His life was a series of discrete events, rather than a continuous stream.There were no visual cues, such as seeing people collect up the swimming togs before heading out to the pool. For this reason we learned to tell him what was happening. Now he uses aural cues to the extent that he often has a better idea than we do of what is happening.

In all things balance is important and we have tried to balance making his (and our) lives comfortable by keeping things ordered, while at the same time pushing at the boundaries and helping him to cope with the unexpected. It is easier to encourage new things when there is a base of security from which to work. We learned to warn him ahead of time if things might be less structured. We learned that sometimes it just wouldn’t work – that a surprise activity would be met with such opposition that it was impossible to proceed. We put time limits on things so that he would know when a possible ordeal would be over. Jonathan trained us pretty well really.

Jonathan preparing to play to the cast of Sesame Street

Jonathan preparing to play to the cast of Sesame Street

So it is interesting that Jonathan likes to travel. We were fortunate to be able to visit New York and the Sesame Street studios in (I’ll just check my dates with Jonathan) October 2009, when Jonathan was twenty. You don’t get a lot more uncertainty than in a foreign country. But Jonathan was fine. I think he decided that the end justified the means. We didn’t push him too far, allowing him the odd day at home watching cable TV. He loved the US food, where you can have three side dishes without a single vegetable. He loved the subway instruction, “Stand clear of the closing doors please” at every stop. He didn’t even mind the long haul flight from Auckland to Los Angeles. It was night time so he slept. Then he ate breakfast, went to the toilet and we were in America. Would that I could do that!

I adore Jonathan. I love his love for order. He makes me laugh everyday. He is a quiet orderly presence in our home, keeping things ticking over in an timely fashion. I understand him now, and know how to help him cope with the unexpected. I know it used to be very challenging, but it is hard to recall the details. I think there is a rosy glow descending over my memories of his childhood, where spontaneity was close to impossible. But I think that’s the way it is supposed to be.

Many good ways

Jonathan, at about 2 years old, dancing in the kitchen

Raising children is pretty tricky really. Despite wanting to be a mother all my life, when I managed to produce our first child, William, I really had no idea what to do with him. Penelope Leach became my new best friend as we struggled with sleeping, feeding and crying. (and looking after the baby). I liked that she didn’t make the baby the enemy that required beating into submission, or at least the occasional truce. We learned as we went. I’ve heard it said that “The first child, like the first waffle” should be thrown away.” Though I would hesitate to throw WIlliam away, and my husband, a first born, is a pretty acceptable human being, I understand the sentiment. As new parents we were certainly making it up as we went along.

Consequently I felt a little less anxious about raising a second child. We’d been through it once, and with WIlliam’s health problems had experienced a range of issues. William was two years old, and walking, talking and pretty fun to be with. Surely a second child would be more straight-forward.

Silly me.

Jonathan’s delivery was worse that William’s (which had been no picnic), as he decided to come face first. But he didn’t need an incubator, and his face recovered quickly. He always had a beautifully shaped head. And, joy of joys, he didn’t have excema or any allergies. He fed well and was gorgeous. His eyes did some funny things, but we figured/hoped that was just being newborn. The first six weeks were pretty idyllic really.

How we found out he was blind is a story for another day. We will now fast-forward a few months. We are starting to come to terms with having a child out of the ordinary. But all the rules have changed. Blind babies do things differently. And being the parent of a blind child requires some extra skills and seems to require super-powers. I search through library books and try to find out what we need to do to parent our Jonathan. It is a daunting and worrisome time.

Then one day I am in the University of Otago library, in among the books on parenting. I find one produced by the magazine, Exceptional Parent. I open it up and start reading and find the sentence that changes my life: “There are many good ways to raise children”.

There are many good ways to raise children. That is it. There are many wrong things to do, but there isn’t one good thing that we have to find out. If I do things differently from someone else, we can both be right. I am freed from the need to find the one right way to raise my sons. I would never say that all we have done and continue to do is the right way for anyone else. But I do know that most of the time we did the best we could under the circumstances. Given the time again, there are things we did that I wouldn’t do, and things left undone that I would attend to. But mostly it was ok. We were not the perfect parents to William and Jonathan, but neither were they perfect children. But as a family I think we have done ok.

Never Ordinary

As a child I liked to be different. Ordinary was dull. I was really happy to come from a family of multiple surnames, when that was far from the norm. (My mother was quick to tell people she had been widowed, rather than divorced). I could say I had four grandmothers, through the various permutations. In my eyes it stopped me from being ordinary.

In 1989 I gave birth to Jonathan. It was a challenging delivery but at the end we were so happy he seemed fine. In some ways he really was. But he sure as heck wasn’t ordinary. And if our family was ever ordinary (which I doubt), it stopped being ordinary that day.

In our family we use the word “ordinary” for people who don’t have special needs. We prefer it to “normal”. Sometimes we have wished that our life were a little more ordinary,when the challenges of raising our children became overwhelming. But it isn’t.

This blog is about our life with Jonathan. I could call it “living with an alien”, which is what Jonathan’s grandfather suggested it was like. Or I could refer to Jonathan’s autism, blindness and prodigious musical talent on the piano, and call it “Savant life”. But I like “Never Ordinary” because of the positive spin it puts on things. “Never Ordinary” is good.